Weekly Check-In Sept 17-23, 2006

[stevem53]

Hi Everyone..

I noticed that its starting to get dark early now..Man that sure did creep up on us fast!..At least I dont have to run the AC everyday now..Saves on the eletric bill

Bad week..My little boat sunk at the dock Thursday..Like I really needed that to happen..:rolleyes: ..So a couple of my friends towed it up into shallow water and I waited for the tide to go out, and last night I went down there and bailed it out..Now its at the outboard mechanics shop getting flushed out and the electrical nightmares fixed

Ive decided to drop my Blue Cross coverage because I cant afford it anymore..It has a $3000,00 annual deductable on it anyway, so it doesnt cover anything anyway unless I get cancer or something..Im eligible for medicare in June 2007 so Ive decided that Im going to take my chances and wait untill then..Its starting to get real old when every month my disability check lasts 2 lousy weeks and its gone..Also Im going to start looking into what programs Im eligible for and go for it..I was never one to do that but I really am left with no choice here now..I have to do what I have to do..One thing that I cant stand is paperwork and the govt constantly inquiring if Im still disabled, etc etc etc..But I suppose I had best get used to the idea

Thank God I still feel ok even though Ive screwed up my meds every single day this week..Screwed them up bad too..:rolleyes: ..Oh well..Hope next week is better

How is everyone doing?

[mamafigure]

Steve,

It is so nice of you to take the initiative each week. Without it, there is no glue to hold this gypsy group together. I was a member for years in the neuromuscular forum. It was the busiest forum - always someone there. Now it goes for days without a post. It does not have someone like you, Steve.

My daughter's oral surgery went well. It was the first place that treated her (and me) like people.

I am still having problems. For those of you that know me, you know that I have terrible phobias - mostly medical ones. I have been fighting to stay out of the ER since Wednesday. Monday I have an appointment with a promising dr, but it is an hour away...and the idea of driving that far is frightening. (I am up now because I feel rotten).

I promise, I will stop whining soon...so please think a pleasant thought - not for or about me, but for yourself. Every positive thought magnifies the goodness in this world, and we all know how much that is needed.

Take care,
mama

[burckle]

Hi Steve:

Sorry to hear about your boat. Hope that it's taken off your hands soon. My week was uneventful. I finally got on chat. Found no one in the PD chat but a number of people were in general chat (I forget what it's called. Everybody is fine at our house. The baby is growing, crawling and we expect walking before his first year is up.

All the best,

Lloyd

[paula_w]

mamafigure did you see this email card in forum feedback? posting it here for you during this difficult time ...whine away - you have to. Don't beat yourself up. We've been taking scoldiings, readers' pot shots, and suppression of freedom of speech for so many years I didn't realize how stifling it had become.

http://www.americangreetings.com/view.pd?i=416269183&m=7507&rr=y&source=ag999

posted from Consider This in forum feedback and social chat....where people answer you when you post .....cough cough

paula

[Evon]

Hello everyone. Nice to hear there are still a few of you out there. Love to hear your weekly check-ins. I have been very busy lately and feeling very tired all the time. I don't know if it is the change of season, particularly going into fall that has me feeling low. I can put on a happy face and feel quite good while out with people but when I get home I feel awful and want to go to bed. I must admit that I have had a close call in a relationship, that is it seemed to be getting too close so I put a stop to it. I really don't feel that I should burden anyone with the prospect of a disabled partner in the near future. It seems that I can forget that I have this disease at times and then I suddenly come back to reality and realize that I am not a healthy person, and who knows how long it will be before I will need help doing things. Life just doesn't seem fair does it? I am feeling sorry for myself right now but I know I can come here where each of you understand.

[Todd]

Nice to see some familiar names. Thanks to Steve for keeping this going...

We've been invaded by crickets but I think we finally got a handle on it. Persistent little buggers...

Started my last semester of grad school and student teaching at the college level. My thesis is approved and done! What a huge weight lifted off my shoulders. Now I can just enjoy my last semester as a student and have some fun.

I'm speaking to 5 health classes at a High School on Monday about living with PD. I have all these different interactive activities planned out and I hope it all works! I could completely bomb and fall flat on my face. But if it wasn't challenging, then what fun would it be?

Our weather is finally turning Fall-like after weeks of relentless 100+ degree heat. I don't do well with cold, so I'm not looking forward to the winter months. But then again, I live in Southern California, so it's never really that bad.

For all you struggling this week, hang in there. I'm sure many good thoughts are coming your way. We believe in you...

[mamafigure]

Paula,
Thank-you so much. I really feel bad and my husband is leaving in a few hours to go out of town again. I am afraid of what will happen at the doctor's if I can even drive that far. My husband drove me there today so that I could find it and the drive made me very ill.

I appreciate your kindnessl

mama

[Jaye]

So much work...so much water! I guess that's why you're called a waterman, Steve.

I'm more than sorry to hear about the PD rough times, been having some of my own, with the infamous hip now headed for surgery and total replacement. Can't cross a room even with my walking stick now. Shiny new walker and wheelchair really help. Haven't been to church since May :eek: , and many of you know I enjoy that a lot. Folks from there been bringing in meals a couple of times a week to lighten BBP's load.

Our bathroom remodel, begun in May, still not done. I guess I'll have to rent a potty chair for post-surgery--or take the responsibility back on myself. BBP's office decided to load him up with extra duties just now.

BUT my spirits are good and I have a recliner with a view of a little woods--who could complain?

Jaye

[melg]

Sure am glad to have found this site and begin reading your posts. It's like being home again. The knowledge I gained on BT1 has been helpful in treatment. Thanks to everyone who has shared in the past and those who continue to share.

[paula_w]

Two sonic booms shook the earth this morning as the space shuttle Atlantis came in for a landing. Always, always a thrill that you have to talk about. This time there were UFOs.....it's the future.

paula

[BEMM]

So, we sold our summer house in Denmark, and we're vastly relieved. It was wonderful when the children were in school and could spend all summer with us, but now all three have families and careers. None of them have time to come every year or time to stay for very long, and the flight gets more expensive every year. It began to be a burden to spend three months taking care of the house and garden and being so far from our children and grandchildren every summer.
It was not at all sad to empty the house, it was actually a lot of fun. The children came and chose what they wanted, my family in Denmark chose what they wanted, and helped us haul everything absolutely no one wanted to the recycling center. And we were able to sell just enough old furniture to pay for shipping the children's and our things over here. We were lucky, years ago, to have bought old farm furniture when it was cheap and unpopular, and to have sold it now when it is IN. And that was a lot of fun, we've never been good at selling anything - we felt quite the clever business people for once.
Now I look forward to not having to worry about all the things we used to have to worry about to maintain the summer house. One house is quite enough.
The weather in Denmark this summer was unusually warm and wonderful. Usually there is wave after wave of low pressure systems all summer, but by a rare combination of air currents, there was a constant high pressure over Scandinavia. And now I know without a doubt that high pressure makes me feel well, while low pressure does terrible things to my balance.
I had no computer access all summer except at a couple of hotel stays, and I really missed the forum. It was a terrible shock to find out that it had crashed, I was so looking forward to 'seeing' everyone again. Thank you to the people who have set up this oasis. It is good to be back.

[ol'cs]

Well Steve, at least you weren't out fishing when the boat took on water! What you are going through financially is what most PWP go through, eventual depletion of the money that it takes to just live a marginally middle-class existence (pay the bills, no frills). This is caused by not having supplemental insurance in place before anything or anyone pegs you a parkie. It is as bad or worse than loosing your loved ones, because "they can't take" YOUR illness, at least when you can pay your modest way through life, it is a great burden lifted from your shoulders.
IN my case, I have lost just about everything else, except my ability to pay to live, in lower middle class comfort. Needless to say, my wife is ready to pitch me, and my kids treat me like a "burden", but all is not lost. I still have my sanity (remember, you lose that and you're pretty well done for), and a few friends who still remember me and come around to see me.
I keep getting closer to that wheelchair. The thing that's keeping me out of it is that there is barely enough room to move an upright adult through my house, and the rooms are small cause the house is 3-stories high. My legs are toast and with gout in the knee, I've been miserable and anti-social all week. Hoping for better days to come. Love reading about what's going on in all PWP lives, and wish i had the energy to address you all individually. cs

[stevem53]

CS..Its good to hear from ya!..Ive been running around like a chicken with its head cut off with this and that going on..Its been one thing after another..At least the Sinamet is working and Ive been able to do what I have had to do within reason

But I have to drop my Blue Cross because its gotten to the point that I cant afford nor justify paying for a plan with a $3000 deductible that doesnt cover Jack @!$%..So Ive decided to wait untill June to pick up Medicare..What has hit me is when I get in the advanced stages of this monster I hope there are programs where I can atleast get the meds I need..That is unless there is something new out there at that time that will give us some relief from this nightmare..I'll just have to take it as it comes I guess, but I'll go down fighting, thats for sure

Im sorry to hear that youre not feeling that good..That sucks!.You are in my thoughts and prayers my friend..All of you are